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Down to 1mg!!

Posted , 11 users are following.

afabchic
afabchic

Hi all. I have missed everyone.  I just could not find out how to get on the forum!!

I am finally down to 1mg after ups and downs, but it is proving more and more difficult to reduce.  I have had a flu type thing for about six weeks and also forgot my pred for three days running (we have a puppy and he has disrupted life thankfully).  So I am having pain and terrible fatigue.  I have been taking paracetamol to get me through.

What I am really asking is: will I be able to get through the next reduction or should I go back to 2mg when I felt well?  I am very confused and really apart from my fab hubby, have no help.  Many thanks.

1 like, 20 replies

20 Replies

  • Handbrake
    Handbrake afabchic

    Posted

    Gosh it's a juggling act this PMR symptoms versus Secondary Adrenal insufficiency from long term use of glucocorticoids isn't it ! Many symptoms are similar but treatment is the same so I wouldn't rush. I got down to zero but pain started to return so upped to 1 mg then 2mg three days later felt much more comfortable at this dose but upped to 3mg for two weeks to be sure. I am now back down to 2 mg. For me severe fatigue,nausea and pain point to cortisol deficiency so I increase hydrocortisone incrementally but reduce when I'm comfortable and active. Even when we get down to zero there will be times when we need to help our adrenal glands by topping up our cortisol levels (surgery etc) the general rule is one month for each month of steroids taken so if you've taken prednisolone for 12 months then you may need to top up your cortisol levels at some point within the next 12 months whilst your adrenal glands recover. 
    • Anhaga
      Anhaga Handbrake

      Posted

      When I was first diagnosed my doctor said that some (or did she say many? can't remember) patients keep a supply of 1 mg tablets on hand just for those times when there is a suggestion that the symptoms are returning.  I can't remember her exact words, and I think at the time I didn't want to hear them as I was determined to be cured and off pred within 3 months.  redface But I wonder if it is this very issue of a rather slow return to a fully functioning hormone system which means some of us will have to continue to be card-carrying pred users for longer than we'd like?cry
  • iellen32
    iellen32 afabchic

    Posted

    Hello afabchic, sorry  for all the disruptions: the puppy, being apart from  your fab husband....

    You have PMR as I can see and I have GCA - would like so much to help you though.

    You will get the answer you are looking for and it will not take too long.

    In this meantime I wish  everything in your life will be back to normal soon.

    🌸

     

  • MrsO-UK_Surrey
    MrsO-UK_Surrey afabchic

    Posted

    Unfortunately, having had flu is likely to have upset the applecart, not to mention forgetting to take Pred for three days!  Paracetamol will do very little if anything for PMR inflammation - far better to get on top of it with a small increase in dose.  You may find that in view of all the circumstances you need to go a little bit higher than just back to 2mg - you certainly shoudn't contemplate any further reductions at this stage......never a wise idea to reduce when viruses are hanging around anyway.  If you try 2mg and it doesn't work, then don't hesitate to go a little higher to get on top of the inflammation now - to leave it too long may entail having to go much higher.  I had to go back to 10mg following a sever flare when I hit 3mg.  Good luck!
  • carol20979
    carol20979 afabchic

    Posted

    I am down to1.5 So far so good but if I have any pain., always the back of my legs I go up a bit like 3mg hold on that till the symptoms subsides the go back down.I have never had to go above 3 mg to do this, but that is just me. I would go back to the 2 mg .Remember this is not a race. You are much better off being pro active.Don't let it get worse stop it in it's tracts.
  • Charko
    Charko afabchic

    Posted

    Well done Afabchic!  Charlotte here, I am down to 2 or 3 mgs (I go up or down even during the week depending on how I hurt and my rheum says I can go up to 5 mgs if necessary.  BUT I still hurt and worst of all is the exhaustion.  I am SO fatigued, I don't know what to do.  I sleep too much and want to lie down too much to rest... any ideas?  Has anyone take B12 shots?  Does it help? What else can I do to combat this awful fatigue?  Cheers, 
    • Mrs_CJ
      Mrs_CJ Charko

      Posted

      Hi Charko,

      other than the aches, my worst symptom is awful fatigue. The only thing I have found that helps is to take a walk. If I have a period of really bad fatigue then a short walk kind of helps - but that's better than nothing.

      And I think if I could make myself take a 30 min walk every morning I would probably have less bad fatigue days overall.

      My B12 blood tests have always been ok so no shots for me. 

      I have PMR, have been on Pred for 39 months and am currently slowly slowly reducing from 4 to 3 3/4.

    • Charko
      Charko Mrs_CJ

      Posted

      Thanks Mrs CJ.  I too have been on Pred for 4 years.  I am 74 years old and lead a hiking group (Laguna Beach, Southern CA), Mon, Wed, Fri from 7:30 to 9:30 am. I can no longer do the moderate 6 milers without having to come home and take a long nap!  I want more help than walking.  Does anyone know about how to kick start those adrenals back into shape?
  • Kdemers
    Kdemers afabchic

    Posted

    I am at 3 and everytime I start to alternate between 2 and 3 the pain returns.  I think I am on 3 for awhile.
    • Charko
      Charko Kdemers

      Posted

      Good idea!  I was able to hold on 2 for a while but got the real flu a month ago followed by walking pneumonia and that messed me all up. Better on 3 right now and will stay for another week or so.  BTW I had the latest flu shot AND latest pneumonia booster shot - so much for vaccines - big sigh!  Keep on walking....
  • lodgerUK_NE
    lodgerUK_NE afabchic

    Posted

    Hi All

    Those ouf you suffering from fatigue.

    Get you Vit D levels checked - you may have to have to push for it - Vit D deficiency causes aches and pains just like PMR - in fact it is an exclusion test before you are diagnosed with PMR.

    I have twice had Vit D low levels, once when on steriods and now after major surgery.   Once boosted back up in my case, 20,000 units for three days every week for the past ten weeks  - after two weeks I could felel the difference.

    I also take 1000 units per day - maintenance dose - buy them from Boots just over a £5 for 90 tablets and have done for the past 7 years, even then the surgery dropped the level right down.

    Also those of  you on 7.5mg and near 5mg, should ask for a ACTH test to see if your adrenals have woken up. You need a referral to an Endochronologist for this test. 

    • Anhaga
      Anhaga lodgerUK_NE

      Posted

      Surely you wouldn't need the synacthen test if things are ticking along ok?  I've already received a "no" when asking for Vitamin D test so need to pick my battles!
    • lodgerUK_NE
      lodgerUK_NE Anhaga

      Posted

      Really there should be no battle about the Vit D test.

      It is there, in black and white, in the British Society of rheumatologists Guidelines on the Diagnosis and Treatment of PMR.

      There are many medical papers about Vit D Deficiency.  Aches, pains and fatigue.

       

    • lodgerUK_NE
      lodgerUK_NE Anhaga

      Posted

      Synacthen test if you have been on long term steroids - you are

      aging during that time.   You adrenal galnds can and do take up to one year to become fully functional.   However, after longterm use

      and taking into account the dosages required it can be that they will

      never wake up.   That simple test will tell you exactly what is what.

      After 5 years on steroid for GCA, I asked as my Rheumy was reluctant to let me get below 3mg and was quite happy to let me stay on it for the rest of my life as I was then 73. 

      We discussed it and I was then sent for the test. It showed my adrenal glands were working and then I was able to come down by 1mg at a time and stop  pred. Remissison - which is now going into my 6th year.

      The Rheumy did not want to run the risk of adrenal crisis and neither did I.

      I do know some PMR and GCA patients who are on 5mg for the rest of their life, the test showed their adrenal glands were not working and were not going to wake-up.

      It is entirely your decision as ever.

    • Anhaga
      Anhaga lodgerUK_NE

      Posted

      My daughter,  a dietitian, told me that in our area so many people were asking for the Vitamin D test doctors were told not to authorize it.  But I agree that it is medically advised for someone like me, it's not a "fashionable" thing at all. And I guess I was thinking one wouldn't need the synacthen test unless encountering difficulties at the low doses.  I'd rather wait until about ready to come off pred, if that ever happens, rather than asking now when I'm pretty sure PMR will insist I stay on pred for a while yet anyway.  I had a week or two of exhaustion at 7 mg, but perked right up after a while.  Now at 5 and not nearly as fatigued as earlier, athough I do notice a drop in energy corresponding to each drop in dosage, which works itself out after a few days. 
    • Mrs_CJ
      Mrs_CJ Anhaga

      Posted

      Hi Anhaga,

      I am in BC and my GP also refused to give me a Vit D test for the reason you mentioned. And I have osteopenia so you would think that would qualify....but no.  However at a visit awhile later I again asked him if I could have one and I said even if I had to pay for it.....so he looked it up on his computer and discovered that he could order it if I paid.  It cost me $65...and I had it done along with the other blood tests he ordered. 

      My first test was low just out of range - and he said there was no issue with that.  However just to be sure I started about 2,000 units of Vit D daily.  Over a year later I asked him for a second test and my results were in the range.  I'm continuing with the Vit D. 

    • Anhaga
      Anhaga Mrs_CJ

      Posted

      I think it is shocking that people such as ourselves who are legitimately in need of knowing our D level are not covered by our so-called universal health programme!  I like how you managed to get the test, however, and will check with my doctor in April or May when I see her next.  I also know, if she doesn't agree, I can go to a naturopath (covered by our private insurance) and indeed get the test, although certainly have to pay.  Seems like it's a good idea.  This is yet another example of how our whole system is geared towards sickness care, not health care!
    • Mrs_CJ
      Mrs_CJ Anhaga

      Posted

      We really want to do whatever preventative tests we can to avoid things in the future but even getting colonoscopies was a big deal....had to wait a year for them!  Our GP seems to really tow the line and is reluctant to order tests or send us to specialists.  I'm not sure if he would have diagnosed my PMR quickly but his office was closed over a holiday period so I went to a drop in clinic and the GP there immediately dianosed me - so lucky about that!  Little did I know what I was facing. 

      you might want to consider timing your Vit D tests for the early spring or the winter as we probably get lots of D from being in the sun in the summer months. Tho' if you think you are low maybe the timing won't be an issue. Just a thought.......

    • Anhaga
      Anhaga Mrs_CJ

      Posted

      I was thinking that timing would make sense.  On the other hand, I have been taking vitamin D for years and years.....  I don't know what to think.question
    • Mrs_CJ
      Mrs_CJ Anhaga

      Posted

      Hmmm......well if you think this is a possible issue then now would be a good time because the sunny months haven't started yet. And you may be able to deduct the expense on your taxes wink
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